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stillriding

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About stillriding

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    Sydney Australia
  1. stillriding

    Methotextrate and Low white blood cell count

    Hi Buttons Yes, my WBC is sitting at the low end of 'normal'. But I am on a lowered dose of MTX just in case. Glad I am not the only pin cushion!! Cheers Simone
  2. stillriding

    Am I the only one who has been embarrassed by this?

    Shelley I have never noticed that, but I did just have a chuckle. Thanks for that. Also, most of us in here are under a secret log in name so I guess that's not too embarrassing.... :)
  3. I just wanted to say, thanks for this post. I have the fat little sausages for fingers and winter is hard for them too. But they're mine and they still work, so I'm pretty happy about that.
  4. stillriding

    Methotextrate and Low white blood cell count

    Noooooo! not pathetic at all. I think we all have our things that freak us out. Mention MRI's and I'll probably pass out! (heart beat increasing just thinking about it) Update on the WCC - worth posting in case someone reads in the future, my specialist now believes it was the actual virus that I had that caused my count to drop. She has had three other patients since present with lowered counts who also were unwell. Possible. I guess when "normal" people get sick they don't march off for a blood test. Those with a lowered immune system do! Feeling like a pin cushion at the moment - but I am feeling healthy which is GREAT! Bye
  5. stillriding

    Methotextrate and Low white blood cell count

    Hello Amanda, Thank you for your concern. My count has returned to the 'normal' range. It took exactly two weeks from my last methotrexate (MTX) injection! I rested, took 10mg of Folinic Acid/day and stayed away from public confined spaces. My specialist does not think it was the MTX and I had a second specialist opinion that also agreed! I have not resumed my weekly injections as I'm a little too nervous to do this until my WCC (white cell count) increases. My specialist agrees. Interesting though is I have a friend with MS as she doesn't take antibiotics as they muddle up her medications also. Perhaps it was a drug interaction ie antibiotics/decreasing prednisone/MTX that caused my WCC to freak out. Who knows? Good news is I'm not having weekly injections for at least two more weeks! Simone
  6. Hi! I posted this on the Australian Sclero Forums and would like to ask a wider audience: Just wanted to know if anyone has experienced a massive reduction in white blood cell count as a result of using methotextrate? Apparently I am low enough to be admitted for IV antibiotics and add another specialist to my list? Currently I am on antibiotics and spent last week in bed fighting (so I thought) the chest infection that I couldn't shake? Any reassurance would be greatly appreciated. Thanks SJP Sclero - my fat little hands; AIH; Mixed connective tissue disorder Diagnosed - July 2011
  7. stillriding

    I don't want a muscle biopsy!

    Hi I have had a liver and muscle biopsy and luckily avoided a heart biopsy! I won't even start on the number of MRIs, CT scans, ultra sounds (my fav), blood tests... , etc. I think I am lucky too. The liver biopsy I decided was necessary to determine the level of trouble my liver was in. I had mild pain and recovered quickly. The muscle biopsy I felt was not crucial for diagnosis. I was started on very high dose prednisone before the pathology reports had even come back and I could not even get hold of the results until 6 weeks later. By then I was well into 50 mg prednisone a day and building up my Methotrexate dose. My CK was in the 4000s (no this is not a typo), I could walk fine, however I had lost all my muscle mass though and could not pick up the kids. A year later I have a diagnosis of possible polymyositis? Or dermatomyositis? No-one really is too fussed on that point. After the muscle biopsy I was in a lot of pain and it affected my recovery dramatically. I have an ugly scar on my left thigh — even though I begged for them to go higher where it could not be seen. Sorry my bad experience does not need to be yours, however, I went into the hospital being able to walk and get myself to the toilet and left 2 weeks later in a wheelchair needing help! Be absolutely certain that you MUST have this test for their diagnosis. Yes, I understand that they want to be certain before they out you on prednisone, however, the gains from the test did not outweigh the invasive and the pain. Scars I can live with. Ask - what will this test show? What will this test not show? Be absolutely certain you know why they are doing it. A year later I have just had my first reading of CK lower than 200 and I am able to live a simpler but almost normal life. I sleep a lot more and I refuse to let any forms of stress enter my life! However, I have a nice belly from the cortisol and obviously the scars. I also have osteopenia due to the prednisone leeching the calcium out of my body. I would take the weight gain any day over all the other possible side effects! I also went to a psychologist once a month during my initial treatment and it helped a lot to talk about everything and especially helped me see the positives out of all of this. This was great for my self esteem and I don't mind people asking if I'm pregnant again! I usually laugh and say, "No way, the first 2 nearly killed me!". Good luck, lose the fear and start asking questions when you can. Get second opinions. And worst case - I hope you have a quick recovery. My ride is not over - I'm riding the winter through with few white blood cells due to the Mex working a little too well! And there was that movie I wanted to see....
  8. stillriding

    Methotextrate and Low white blood cell count

    Thank you Jo and Robyn for such speedy replies. The PDS always scare me however I chose one sentence that seemed the most encouraging "Bone marrow recovery typically occurs within two weeks after the withdrawal of MTX." So hopefully next week will see an increase in my blood count. Cheers Simone
  9. Hi Just wanted to know if anyone has experienced a massive reduction in white blood cell count as a result of using methotextrate? Apparently I am low enough to be admitted for IV antibiotics and add another specialist to my list? Currently I am on antibiotics and spent last week in bed fighting (so I thought) the chest infection that I couldn't shake? Any reassurance would be greatly appreciated. Thanks SJP Sclero - my fat little hands; AIH; Mixed connective tissue disorder Diagnosed - July 2011
  10. stillriding

    Rest in Peace...Life Before Scleroderma

    Amanda Thank you for sharing your grieving process. You are not alone. Yes, I have also said goodbye to my previous life and I actually commented to a friend of mine that I feel like I have lost 9 months of my life. She actually corrected me and said "no you are transitioning". I gave her an odd look, but the more I think about it I realise that she is right. I may have come out of the high dose prenisone phase, but really I am transitioning my life and using my new network, new hobbies and new body to start over again - but differently. I secretly suspected in my pre-illness life that I probably was overstressed, overtired, underweight, over-it-all and something had to give - and it did - my health. I have transitioned into a slower individual, who takes the time to watch the birds, pick flowers, play with the kids, cook healthy meals and send lots of love instead of anger when someone takes my parking spot. I have also learnt to pick up the phone and ask for help. I also can accept help and not feel guilty if I need to spend days on the lounge resting. I was offered counselling from the start and I just went along for the chat. I learnt a lot about coping with energy levels and dealing with relationships, life, grief (shedding tears for some beloved sports I have given up) etc etc. I also decided from the beginning to add to my massive list of medications an antidepressant - which helped restore my sleep patterns and I also think has kept me more up than down. And Shelley, your gift of a "moment of pure silence" really says sooooo so much, thank you. Amanda I hope your journey is going ok. I send you strength, vitality and love. Simone
  11. stillriding

    Another Scleroderma case

    Hi Steve I was wondering if you made contact with the Scleroderma clinic in Sydney? I'm off to see my Liver doctor next week, but haven't yet made contact with Sclero experts. Also how are you going? Cheers Simone BTW Jaggers I loooove Tasmania. It is beautiful.
  12. stillriding

    Good doctor in Sydney?

    How are you going, Keep Smiling?
  13. stillriding

    Happy Valentine's Day!

    Happy Valentine's Day to everyone who reads this post. I love this forum as it reminds me that I am not alone!! I am sending you all love.
  14. stillriding

    Another Scleroderma case

    Hi Steve, Sorry to hear of your diagnosis. I thought I would say hi as I also started my journey similar to yours. I also live in NSW-Sydney and think our weather is probably okay for this odd disease. Mind you I have removed skiing from my favourite sport list! After I had my carpal tunnel operations my hands just never returned to 'normal'. They remained puffy and looked a bit odd. I was also very fit at the time. I am 36 and a mother of 2 young children. My recent diagnosis was not Chronic Fatigue but Sclero/Auto Immune Hepatitis/Polymyositis. After coming out of the fog of high dose prednisone for 6 months (still reducing) I have realised that I have been given another chance at life. I enjoy my time with the children - playing and running after them has become a gift rather than a chore. I have created personal 'spare time' with the help of my network. I now spend my 'spare' time meditating, practicing yoga and reading books. I am on weekly methotextrate injections which so far has had few side effects - I think I will take almost anything to get me off prednisone. Anyway, that's me, Take care Simone
  15. stillriding

    Antibiotic Use and General Illness.

    Great advice! I saw my general practitioner and yep ended up on the antibiotics as well as upping my reflux meds. But I was advised against letting the illness run its own course. Thanks.
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